SEPTEMBER 2023 - New Members

[Polar Bear]

Tuesday 19 Sepember 2023

Welcome today to

Repos40 who has had RLS since 4 years. Sleepless nights with 3 to 4 hours sleep on average. He has tried several physical treatments (cold/warm showers & foot-baths; TENS, regular sleep-procedures; massages; stretching etc.) and has had good experience with wearing support tights during day as a medical treatment. Repos40 lives in Europe.

You have tried various physical treatments but don't mention what your doctor does to help or being prescribed any medications. Unfortunately most rls sufferers have to resort to prescribed medications. Has your doctor checked your ferritin serum level which is very important and needs to be up around 100. This blood test is not usually done automatically, you need to ask for it. Gabapentin or Pregabalin are good first line medications.
Take a look at the link in my signature for information. Read the Just Joined Forum. If you make a post telling us if you have tried any medications etc. this will give us a starting point to try and help you.

[Polar Bear]

Tuesday 19 September 2023

Welcome today to

Mark Hess who needs better information. RLS has caused major lack of sleep issues.

Lack of sleep is what drives most sufferers to seek help. Everyone here understands how you feel. Ordinary sleep aids don't work well for us. If you make a post giving details of how you are managing your symptoms at present this will give us a starting point to try and help you.

[Polar Bear]

20 September 2023

Welcome today to

Gilheth who has RLS symptoms everyday, every night. Gilheth averages 4 to 5 hours of sleep per night and is 82 years old and it’s only getting worse.

I am sorry you are suffering like this. Lack of sleep is so debilitating and we all understand. Please read the Just Joined Form and also take a look at the link in my signature. Has your GP checked your Ferritin Serum iron level, this is so important and as an RLS sufferer you'd want it to be up around 100. You have to ask for this blood test as it is not done routinely. Dont accept it if you are told it is 'normal' because normal can be accepted at around 20. If you make a post and tell us about your RLS treatment and how you have been managing your symptoms we will do our best to help you.

[Polar Bear]

Thursday 21 September 2023

Welcome today to

Coreysan who has had RLS for 20 years. Coreysan has been treated with Sinemet and is curious about other treatments.

Sinemet should not be used every day long term because it can cause augmentation. It should only be used about 3 times each week. You will find plenty of information here on medical and physical ways to help your symptoms. Also in the link in my signature. If you make a post giving details of what has or has not been of benefit we will do what we can to help.

[Polar Bear]

Friday 22 September 2023

Welcome today to

Nurselinda who has severe rls and feels hopeless. It has got to the point where she can't relax but very little and that is early morning. Also has arthritis and everything that she takes for it works against her rls medication. Linda is at her wits end.


We are sorry you feel so hopeless. If you make a post and tell us how you are presently treating your rls, what medications you are taking and what has or hasn't helped in the past, we will try and help you.

[Polar Bear]

Friday 22 September 2023

Welcome to

Euniceanderson who has dealt with rls for about 30 years and is grateful to have seen, for the last 4 years, one of the leading physicians researching rls. Eunice has been taking opiates most of that time. These control her rls but there are issues around side effects.

Most medications have side effects and we are aware of the difficulties with opiates. If you will make a post and tell us of your treatment we will do our best to help.

[Polar Bear]

Saturday 23 September 2023

Welcome today to

Orv783 who only gets about 3 hours sleep each night. Orv783 can no longer sit and read or go to the theatre or restaurants. Is exhausted and has experienced augmentation with ropinerole.

We understand all that you are going through. Have you had your ferritin serum checked. This has to be requested. It is not done in routine blood tests.you need your level to be up around 100 and not just the accepted normal which can be as low as 20. If you make a post telling us about your rls treatment so far this will give us a starting point to try and help you.

[Polar Bear]

Monday 25 September 2023

Welcome today to

ETS395 who has RLS in both feet, legs and up my arms. Barely sleeps. Can't sit at a job or fly on a plane as the RLS symptoms start by 10 am each day. Falls asleep at the wheel. Cannot participate in any social activities after 5 pm from exhaustion.

ETS395 has been on Pramipexole for many many years. It worked for a long time, however eventually augmented. Neurologist said to take twice as much of this medicine??? ETS395 is sleep walking, falling out of bed (broke a hand). Gabapentin does not work.
Brother, cousin and daughter have RLS.

What an example of uncontrolled RLS. Our members here will all understand how you feel.
Have you had your Ferritin Serum Level checked. This is not typically done as part of standard blood tests and you need to specifically request this. A Consultant who knows what he is doing with regard to RLS would already know to do this. A normal level is considered ok at 20 but as an RLS sufferer we want our levels to be up towards 100.
Are you still taking Pramipexole, if so you will need to wean off and to do so is very difficult so I hope you have an understanding doctor.
If you are trying to come off the Pramipexole it's likely that Gabapentin is insufficient to conrol your exacerbated symptoms. Again.... you need an understanding doctor who may prescribe a low dose opioid while you wean off the Pramipexole.
Often there is a familial link with RLS (although in my own case I can't find any).

of Please make a post giving your treatment management. Tell us of current and previous medications which may or may not have worked. This will give us a starting point to work from. Also please take a look at the link in my signature.

[Polar Bear]

Monday 25 September 2023

Welcome today to

ambyrporter whose rls has kept her from getting quality sleep for the last 20 years.

As rls sufferers we all struggle with sleep but with appropriate treatment we can usually make improvements. If you will make a post telling us about your rod history and your current rls management this will help us to try and help you.

[Polar Bear]

Thursday 28 September 2023

Welcome today to

Tkohutka who is having trouble sleeping and is gaining anxiety.

Sleep is a real issue for rls sufferers. If you will make as post providing details of how you are at present treating your symptoms this will give us a starting point to try and help you.

[Rustsmith]

Thursday, September 28

Welcome to

cocacola808, who has had RLS since childhood and now at 58 it has become the worst thing to deal with.

There are many ways to manage the symptoms of RLS ranging from iron therapy up through the opioids. If you would like some suggestions on how to improve the way that you deal with your RLS, just post a message and let us know what you are currently doing to get by.

[Polar Bear]

Saturday 30 September 2023

Welcome today to

jbubly6 whose husband has chronic restless leg syndrome. It's impacting the quality of his life, because it greatly impacts his sleep.

Sleep is such an issue for all of us rls sufferers. You will find lots of information here on the Discussion Board. Is your husband taking any medication, prescribed or otherwise. Has his doctor checked his Ferritin Serum level. This is important and needs to be requested as it is not part of the normal routine blood checks. The normal result is accepted as ok at anything from 20+ but as an rls sufferer we'd want it to be up around 100.
If you have any questions please make a post giving some history regarding his rls treatment and we will be delighted to try and help.